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Hospital breastfeeding a child with a congenital heart defect – Anna


Erin was born with a congenital heart defect although we did not know before her birth. I had gestational diabetes and this was the main focus of my care. I'd made it clear I wanted to breastfeed and had been well supported and encouraged antenatally regarding this.

I was induced at 38 weeks due to the diabetes and Erin was very sleepy. I was unable to do skin to skin with her as I had to go to theatre for stitches. My husband stayed with Erin but was not encouraged to do skin to skin either. When reunited with Erin I tried to breastfeed but she could not latch. The midwives helped me to try and get her feeding but she kept on falling asleep. Eventually, around 18 hours after her birth Erin was taken to NICU [neonatal intensive care unit] for tests and I was advised her blood sugar was low so she needed formula. She was given this by a nurse and I was not there. Erin kept on being taken away for tests and scans. I couldn't go with her. I was never told about skin to skin.

When Erin was 1 day old she was transferred to Hospital A and her heart defect was identified. I was unable to go with her immediately but got myself discharged and joined her there around 10 hours later. She was being given formula on a strict schedule and her intake was being monitored. I made it clear I wanted to breastfeed. Erin was in an incubator and heart surgery was scheduled for when she was a week old.

I worried about taking her out of the incubator too much for fear she'd get cold. Again, no‐one mentioned skin to skin and how it can help regulate body temperature. The nurses gave me wonderful support to express. They taught me to use an electric pump, lent me equipment, helped with sterilisation and stored milk for me. I was regularly offered water, private space and vouchers for free meals in the canteen as I was a 'breastfeeding mum'. Those vouchers made me feel so proud, like I was really doing something for my daughter and I loved handing them over. However, I was not given any help to breastfeed. It didn't seem like an option. I felt as though expressing was the best I could do.

Following Erin's operation she was on ICU [intensive care unit] and I wouldn't have been able to breastfeed her. I continued expressing every three hours throughout day and night. This was hugely important to me. There wasn't a lot I could do for Erin and at times didn't really feel like her mum. Expressing helped me make a connection with her and gave me a purpose.

Erin died when she was 22 days old. The ICU freezer was full of bottles of my expressed milk that she'd been unable to have. I couldn't bear for it to go to waste. I remembered watching a documentary in pregnancy about breastfeeding and women who donated milk so I did an Internet search and found details of UKAMB. I spoke to one of the nurses who agreed to help me and we were able to donate my milk to help other poorly babies. I viewed this milk as Erin's and this donation as Erin's Gift to other babies who needed help.

Looking back now I'm glad I expressed for Erin and that she was able to have some of my milk and I'm hugely appreciative of the support I had to express (from my husband as a well as hospital staff). I do wish a few things had been different though. I wish I'd known about the benefits of expressing milk in late pregnancy to get a stock of colostrum ready in case Erin had required milk to regulate her blood sugar levels and was not feeding from the breast (as actually happened). I wish I'd known more about the benefits of skin to skin and requested it more. I wish there had been more support at Hospital A to try and get Erin feeding from the breast rather than just expressing. I wish I'd had more confidence and encouragement to express by Erin's bed. I was grateful to be given a private room at the time, but now I think back with regret about all those missed hours with her. We had such little time together I should have spent every minute possible by her side.

I'm always going to wonder whether breastfeeding Erin would have made a difference to the outcome and whether she may have survived had I been able to. This may sound ridiculous to others. She had a heart defect which required surgery. She had amazing medical care and high‐tech equipment looking after her. If these things couldn't save her then how could breastfeeding?

The truth is I don't know, but I also don't know why she died. She shouldn't have. The odds were heavily in her favour. The medical team couldn't give us an answer as to why she died when so many others with her condition live. I read articles about the wonder of breastfeeding, the amazing benefits of skin to skin for poorly babies and I think what if? What if I'd managed to breastfeed her? Would it have given her a little something extra? Would it have given her the strength to survive?

I'll never know. I'll always feel guilt and regret. I'll always wish I'd managed to breastfeed her. I hope others get support to successfully breastfeed if they so wish. I don't want others to feel the same regret.

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